For many people seeking help from social care, the most likely first port of call is their local council. These two studies examine what happens to people who are self-funding and whether they are offered an assessment of their needs; and what information is provided about sources of help and advocacy.

It is evident there is a good deal of confusion about the duties of councils towards self funders or potential self-funders. The study by I&DeA found practice and thinking around information and advice are developing rapidly as part of the transformation agenda of Putting People First.

Objectives

The advice line operated by the Relatives and Residents Association (R&RA) has highlighted a range of difficulties encountered by people once they, or their loved ones, have made the decision that they probably need to go into residential care. People who were potentially self-funding typically experience a muddled and misleading world with little or no advice.

The R&RA study explored the experiences of people contacting the advice line, and examined a sample of council websites to examine the information made available to self-funders. Almost a quarter of the 2,500 calls to the advice line each year relate to issues to do with self-funding and assessment, or to do with the difficulties faced by people living in care homes when their money begins to run out.

The I&DeA study, commissioned by the Transforming Adult Social Care Programme Board, examined “current activity and thinking in relation to information, advice and advocacy and the delivery of Putting People First”. As with the R&RA work, the methodology included a review of literature and websites. It also included a survey of directors of adult social services, fieldwork in councils, and engagement with national statutory and voluntary organisations.

Initial failure of councils to assess people they believe will be self-funding.

Failure to separate the process of needs assessment from financial assessment.

A failure to help residents when their funds run low.

In some situations, R&RA believes councils are avoiding their legal responsibilities towards local citizens. People describe being discouraged from pursuing contact with the council – for example, being told that it will cause unnecessary delay. In situations where people have spent their savings, the council may tell them they will have to move to another home or that they do not need residential care.

The authors comment: “Even in times of extreme crisis, families are unable to obtain practical assistance. As a result, they feel threatened or think they are being punished by the local authority. The levels of distress they feel are palpable.”

People seeking help often have little or no experience of contacting the council. They don’t know where to look, what their entitlements are or what to expect. In trying to sort out their care, they are met with unfriendly and unsympathetic responses from health and social care bureaucracies keen to be relieved of their presence, says R&RA.

The role of social workers and other social care staff was typically experienced as a gate-keeper, filtering people out from access to services, assessment or support.

The R&RA study reviewed the websites of 14 local authorities, selected to provide a broadly representative sample of English councils. The exercise revealed variations in the way potential candidates for assessment are informed about what to do. While some councils were applauded for their efforts to make information explicit and accessible, some major failings were also identified. Problems included:

Poor website navigation.

Incomplete or inaccurate (and out of date) information.

Information written for professionals rather than for the public.

An emphasis on charging for services rather than information about needs assessment as a process separate from any financial assessment.

The R&RA also highlights what it sees as “an implicit bias” against residential or nursing homes, with the emphasis on supporting people in their own homes always seen as the priority. The authors comment that the shortcomings in many people’s experiences sit poorly alongside the espoused commitment to personalised care in general, and with ministerial pledges to improve support for self-funders in particular.

The study by I&DeA also took the personalisation agenda as a starting point. Unlike the R&RA work, this study was concerned with information, advice and advocacy in general, rather than solely for people funding their own care.

An survey of directors of adult services undertaken via the Association of Directors of Adult Social Services produced 82 returns (55%). A study was also undertaken of the websites of 50 councils with social services responsibilities. Considerable variation was identified between websites in terms of content, accessibility and quality.

The survey concluded that access to information and services is “considerably less well developed in adult social care than in some other services sectors”. Information and advice about advocacy, support planning, brokerage and eligibility criteria all revealed key gaps.

In-depth work also took place in a sample of seven local authorities. The findings from this stage of the study indicated “practice and thinking is developing rapidly”. Initially the focus was on developing the “mechanisms and culture” of individual budgets, but “they were now proactively engaged on a broader front, including strategy and practice in relation to information, advice and advocacy and related work in community capacity building and engaging with current markets”.

Analysis

The concordat Putting People First set out the government’s “vision and commitment to the transformation of adult social care”. Among the measures it outlined was that councils should ensure the provision of “a universal information, advice and advocacy service for people needing services and their carers irrespective of their eligibility for public funding.” This acknowledged the problem where people who are deemed ineligible for social care funding effectively receive no support at all through social services.

The subsequent local authority circular, Transforming Social Care, published in January 2008, made it clear that information should be available and accessible to everyone to “support decision-making and access to care services, irrespective of people’s social circumstances and eligibility for statutory services”. This includes people with sufficient resources and savings that cannot receive help from public services, and people whose needs are below the eligibility threshold. At present, relatively little is known about either of these groups.

The 2008 CSCI report on the state of social care, and the accompanying special study on people “lost to the system” identified an increasingly sharp divide between those who are and those who are not supported by the system, and inconsistencies both within and between councils as to who is assessed as eligible.

The government responded by asking CSCI to undertake a review of eligibility criteria for social care. The report of the review made several recommendations including the need for better arrangements that offer universal support to all citizens. In responding to these recommendations, the government indicated that revised guidance on Fair Access to Care will be produced, and reiterated that it was always the intention that everyone is entitled to an assessment of their needs and information on how those needs might be met, irrespective of who might meet the costs of the services.

The 2008 local authority circular on transforming social care pointed out that the approach to personalisation is all about the way in which services are tailored to the needs and preferences of citizens; the role of the state is to “empower citizens to shape their own lives and the services they receive”. It also emphasised that for people funding their own support and care, the future transformation will require clear information points, and support and brokerage services that enable people “to navigate the system, access qualified and appropriate advice and purchase quality services or support which meets their needs”.

The latest circular, issued in March 2009, points out that significant redesign of processes, practice and culture, is necessary. The social care reform grant (£500,000 ring-fenced over three years) has been introduced to support these reforms.

The DH has stated that in the first year of the grant “significant progress has been made by some councils.” This includes the development of stronger universal information and advice services, and the expectation that such development will accelerate.

The R&RA and I&DeA studies are helpful in exploring information and advice provision in the new social care agenda. More investigation is required to examine implementation progress and to highlight good practice. Moreover, while the idea of a “universal offer” should include information and advice for everyone, it is likely that there are specific issues (particularly around assessment) for people who are self-funding, which require further exploration urgently.

Melanie Henwood is an independent health and social care consultant.

Resources

HM Government. Putting People First. A shared vision and commitment to the transformation of adult social care. London: The Stationery Office, 2007

CSCI (2008). The State of Social Care in England 2006-7. London: CSCI.

Melanie Henwood & Bob Hudson (2008). Lost to the System? The impact of fair access to care. A report commissioned by the Commission for Social Care Inspection for the State of Social Care in England 2006-7 report.

The duties of councils towards people who are self-funding or potentially self-funding must be clarified. The R&RA found that councils too often conflate their duty of care and advice and their possible duty of financial support, when these are separate.

There is a continuum of information and advice from the provision of leaflets listing local care homes to “advice and support.” While some councils provide full and clear information to people regardless of their financial means, the R&RA found others providing “muddled and incomplete information”.

Councils vary in whether they offer assessment to people who are self-funding. When people do not have access to assessment because of their financial assets they are excluded from advice and care management.

Local strategies must be developed to cover all aspects of information and advice accessible to all people who may use social care services. Strategies need to involve people who use information, advice and advocacy in the design, implementation and evaluation of those services.

Access to independent advocacy services is especially important for people who are self-funding and living in care homes and may otherwise have no one to provide help and advice on their situation.

Signposting people to other sources of help can be unhelpful if it happens more than once and people feel they are simply passed from pillar to post but without their needs being addressed and with no follow up of progress.

This article is published in the 4 June 2009 edition of Community Care magazine under the headline Improving support for self-funders